Do you know how you got MC?

[healthydesire]

I know exactly how I got MC. It was 2009, I was a newly divorced woman and just met a nice looking man on line. We went on a date, seemed to go well but when I was going to see him again he was very ill. I thought he was exaggerating. After a week, he said he was on the mend so I went to see him (he lived in a different city). Long story short, he gave me the kiss of death aka the kiss of MC. I went home feeling fine but 2 days later I was at my work station feeling on top of the world and within a couple hours was feeling so awful I wanted to curl up in a fetal position. It may have been a super flu bug. My body was never the same.

Although I eventually got better, I had diarrhea instead of normal BMs. I thought I had a parasite and went to urgent care after a few weeks of it. No parasites found so I shrugged and figured I had to solve this mystery myself. Years went by. Embarrassing moments in the employee bathroom. I tried supplements, anti-diarrhea meds, prilosec... Then I went on the South Beach Diet in the fall 2013 to lose several pounds, I had done it in 2007 and lost 38 lbs! All my baby weight. This time was a different experience, the more dairy I ate the more I ran to the bathroom. I was guessing dairy was the culprit.

The breaking point is one day when I didn't make it to the bathroom in time. thank God I was in my own home. I was so depressed. I felt like a baby without it's diaper. Seriously unhappy. I decided it was time to see the Dr. Had a stool test that revealed I'm lactose intolerant, had an endoscopy and colonoscopy which revealed I have GERD and needed my esophagus stretched and the colonoscopy revealed I have collagenous colitis. I was happy to finally be able to name this mysterious monster that lives inside me.

I know it came from a bacterial or viral infection. I don't know what good this knowledge does me. I just wondered if anyone else can pin point how it started and also, does it help to know how it started? Sure wish I never met that man who gave me the kiss of death. I miss having a good GI tract.

[Sheila]

Welcome. All kinds of things seem to trigger MC. I got an ear infection and went to the local walk in clinic because it was a weekend. I was prescribed a strong antibiotic and promptly got D. My husband went away on a business trip and I was struggling to get the D under control. Another antiobiotic was prescribed but the D continued. Finally ended up in the ER getting IV fluids. Because of the extreme loss of fluid, my left Eustachian tube got stuck open and I lost significant hearing in that ear plus an horrible echo. The D continued and after some months went by, I was finally diagnosed with CC. Took a while longer to get prescribed Entocort and more investigation on my part to discover I also had celiac disease.

After 2+ years! I'm finally off Entocort and am managing with diet alone. I'm on a modified Paleo diet, prepare most of my food from scratch.

I think we all have horror stories about not making it to the bathroom in time. My worst experience was in the Rome, Italy train station. Yikes, that was bad. There was a post a while ago where we posted our worst experiences. I laughed so hard, my stomach hurt. We are a very supportive community. I know I can ask any question and get a host of relevent answers to help me. Tex and Polly give expert advice when needed as well.

Good luck and welcome.

Sheila W

[DebE13]

I got the flu in March of 2007. When the bug went away the D remained. That is when my CC was activated. I had a lifetime of a poor diet- high carb, almost no meat, a ton of sugar coupled with eating excedrin like candy for migraines, 15 plus years of being on the pill, and never ending stress. I can't say for sure what the cause was, bad genes ticking away like a time-bomb? At this point, for me, it doesn't matter because I can't change it.

I can relate to the humiliation and frustration of accidents both in private and public. It is the motivator to make serious changes in one's diet. I think if you hadn't gotten it one way it would have most likely come about in another. Have you been able to get it under control? Have you tried eliminating other common offenders like gluten and soy?

You're just around the corner from me! I'm just a hop-skip-and-a-jump from Wausau. I can finally see pavement after a long winter of rutted, ice covered roads. Shoveled about three feet of snow of the roof a few weeks ago, glad it's finally starting to melt.

[Polly]

Good Morning,

I'm pretty sure my MC was triggered by a 3 week course of doxycycline that I took for suspected Lyme Disease. It turned out my Lyme test was negative, but the damage to my gut bacteria had been done.

I remember vividly the first time the explosive, urgent diarrhea hit. I had just filled a grocery cart to overflowing and was waiting in line to check out. I barely made it to the bathroom and was in there for what seemed like forever. I was so wiped out when the D finally quit, that I just walked out and went home. I guess they had to unpack the abandoned cart when they found it.

My worst D story was the day I had to squat by the side of my car in broad daylight to poop at the entrance to my neighborhood. The second worse was when I had an accident in my pants while sitting in the car with my son waiting for the school bus.

Polly

[healthydesire]

Thank you Sheila, DebE13, and Polly for your replies. I really appreciate it! Having CC and not knowing it is like living in the dark trying to find your way. At least i have a name for it now.

I find it very interesting how you, Sheila got it from antibiotics. For me, antibiotics are a last resort because they reek havoc on my Ph levels and it takes a lot of supplementation to get rebalanced. Still sometimes it's the only thing that works.

DebE13, how interesting it sounds like we both got it after the flu. Like you I lived most of my life unhealthy. When I was a teen I had an eating disorder and consumed tons of soda. In my early 20's I ate better but not the best. I was on the pill till 25, I quit it due to it giving me Rheumatism type symptoms. When I was 19, I found acupuncture and other natural healers and did begin a path toward natural healing. It helped so much. Was I still genetically dispositioned to get CC? Who knows. To answer your food question, I've been without dairy for over 3 months and without gluten in my diet for around 13 days. Before I gave up these two things I was running to the bathroom 3 times a night with D and waking up exhausted. I had a period of normal BMs a month ago but then they decided to go away. I won't go back to dairy but I really miss sushi with rice. I may give up gluten but eventually I may have a corn chip or rice. For now, I'm just living a paleo type life. The nice thing is I've lost 6 lbs just living paleo. Yes, you are my next door neighbor! Thank God winter is finally getting it's butt kicked by spring. This has been a brutal winter and I think we are all craving warm winds and jacket free days:)

Polly, isn't it interesting that our intestinal lining replaces itself every 24 hours and yet this disease remains? I am staying hopeful that through my change in diet I will find healing. My heart goes out to your for your horror D stories. I've nearly been there. I don't know how I held on sometimes. I never want to re-experience that again.

I've heard that taking steroid drugs makes the healing process harder. For now I am working on healing through food and Philips Colon Health probiotic, plus a myriad of other vitamins and herbs. I've read about cannabis oil shrinking tumors and healing cancers. I wonder if this might be something that would also heal the gut.

[tex]

Actually (though one can indeed find estimates that range from as short as 14 hours to a week or more), the official position ( National Center for Biotechnology Information, U.S. National Library of Medicine) is that the lining of the small intestine is replaced on approximately a weekly basis.

http://www.ncbi.nlm.nih.gov/books/bv.fc ... ction.4113

However, that's not exactly true for someone who has MC. With MC, the healing process gets stuck at the first stage (inflammation), and it cannot progress past the second stage (debridement by means of immune system white cells, such as macrophages), so that progression to the third stage (actual replacement with new cells) can only occur on a haphazard basis. The reason why it gets stuck and cannot progress is due to the fact that unlike most trauma (which is typically caused by a single, discrete event), the inflammation/damage continues to be generated on a daily basis, as long as we continue to eat the foods that trigger the production of antibodies.

That's the reason why MC is a chronic (and self-perpetuating) syndrome. I have a hunch that the reason why MC exists as patches of inflammation scattered at random in the gut in the first place is precisely because the healing process is corrupt in those areas, so the cells in those patches are too old, diseased, and long overdue for replacement.

If you are interested in using supplements to help heal the gut, one of the better choices is L-glutamine, which is an amino acid used by body builders to help speed up the repair of smooth muscle damaged during workouts. The intestines are made of smooth muscle. A few members here have had good results with it (while others didn't notice any effect). No one has reported any adverse side effects that I'm aware of.

Beware of some of the supplements recommended at various locations around the internet for healing the gut, because with a compromised digestive system, we can't always tolerate some of those items. As a result, some of them can make symptoms worse, rather than better.

Tex

[Leah]

I think we are all pre-disposed to this because of our genes, but something does seem to trigger it. it can be so many different things, but everything seems to be some kind of stress to the body. Me being IgA deficient made things even worse for me,, but I think the real trigger was when I decided to go on this very high fiber diet. Oh my God, what a mistake! Luckily, I go a Dx within a couple months, so I didn't accrue too much damage.

Doing well now. Gluten, dairy, and soy free… but I took out many other foods during my initial healing period ( RAW fruits and veggies, beans and legumes, tomato and t. sauce, spicy or acid foods, caffeine, wine, chocolate, too much sugar)

It sounds like you think that rice and corn has gluten. They don't. I can eat both. Some of us can't. But be careful with the sushi because most soy sauce is made with wheat. Start reading ALL labels because even a little gluten can prevent healing and perpetuate inflammation.

Good luck
Leah

[CathyMe.]

Welcome. I definitely had a genetic predisposition to it, as my grandmother and father suffered from IBS like symptoms for years and my brother was diagnosed with ulcerative colitis at the age of 50. I think in my case, my bout with shingles 3-4 years ago, in addition to a high level of stress triggered it for me.
I too can relate to the accidents or close calls in public but what vividly sticks in my mind (and what caused me to finally see my PCP, then a GI) was numerous bouts of squatting in the woods while walking my dogs after being doubled over in pain. The fatigue also finally got to me and made me question what was going on.

Entocort was a god send for me. Brought my symptoms under control and with huge diet changes (gf,df, sf, and I can't do corn either) I am currently having normans daily with no med's needed at this point.

[ldubois7]

Tex,
That's a great explaination.....and makes perfect sense. I'll copy & take it my GI, next month.

[gluten]

Hi Healthydesire, Did your friend ever tell you what his ailment was? Jon

[tex]

Tex,
That's a great explaination.....and makes perfect sense. I'll copy & take it my GI, next month.

I hope that your doctor doesn't throw you out of the office for wasting his or her time with pure speculation (for which there's absolutely no substantiating research).

Tex

[ldubois7]

Tex......

[Gabes-Apg]

Mine was a combo of elements;
- genetics (mother has crohns)
- mother had blood poisoning whilst pregnant with me (altered gut microbes)
- connective tissue abnormalities, = 3 x bowel surgery by age 24
- 6 years of high levels of stress (3 yrs messy divorce then 3 years of 80hr weeks lots of travel )
- taking doxycycline as malaria prophylactic for travel to Papua New Guinea.

10 years prior to the MC Dx I adopted eating plan that was low gluten, low dairy and low yeast, took good quality herbs and supplements and had regular acupuncture treatments. Maybe this delayed the chronic stage occurring.

Based on what I have learnt via the wonderful people on this forum, and the various research articles I have read, for me it was not if I got an IBD, it was a case of when.
The doxycycline was probably the last element that caused the volcano to explode.
I have pondered what would be worse, cerebral malaria or MC.
Both are pretty much the same, you can't get rid of them, they both make the body super sensitive and a flare affects the whole body.

Recently I found out that both grandmothers, father side and mother side, both had issues with dairy. Issues with food intolerance is in the genes on both sides.
My elder sister has been gluten and dairy free for 4 years.
In the last few weeks, I found out there are cousins following gluten free, minimal dairy. Not for any diagnosed medical reason namely because they feel better, have more energy and focus.

[ldubois7]

Just to pipe in my 2 cents worth....I was weary of food my whole adult life because of the effects I'd have, but everything seemed random. I'd eat shrimp one time and have a reaction, then another time I'd be fine. I blamed unclean food. It got to the point where I ate basically chicken and veggies/fruits, and processed foods. Somehow I felt safer with processed foods....boy, was I wrong.

A few years a go I lived in a home for 8 months (while my new house was being build) that contained mold. During that stay, I got a flu so severe (my ear drum ruptured) that I had to take very strong antibiotics, which led to consistent candida. I did take probiotcs all along! About a year after the antibiotics (I was an elementary teacher) I just couldn't shake the fatigue during the summer. In August, my mother and I ate at a coffee house (chicken wraps), and a day later the D began. My Mother also became ill, but not as severely as me.

The rest is history, as they say..... had a colonoscopy, was diagnosed with MC, and told nothing else. I found this site, did the Enterolab testing & MRT, and SLOWLY progressed. It is only with the guidance and support from this forum that I have begun to get better.

Have you read Tex's book yet? Have you had the Enterolab testing? Those are good places to start your journey.

Good luck to you!

[wonderwoman]

DebE, I saw the word Wausau, my hometown for 60 years. Where are you in WI?

I haven't posted or read in months. I am doing very good on one budesonide every fifth day. Come May first I will have more time to spend here. Right now I am on overload. Not good. Will need to take some time to read and catch up on how some of the old timers are doing. Bless you all, you saved my life!